Sad News Anne Mawdsley

Sad News Issue No. 128

Volume 3 2014

Anne Mawdsley MBE 1942 ~ 2014

Inspiring, Passionate, Committed, Courageous After working with such an incredible individual, we are shocked and deeply saddened by the news of Anne’s passing, even with the wonderful comments and tributes to Anne, some of which are shown overleaf, they are but a small measure and only touch on her true achievements - given so selflessly and tirelessly for the last 32 years. We are forever in your debt, Anne, for creating an inspirational charity dedicated to those with Raynaud’s and scleroderma and we will continue to provide the service to each and every person we connect with, in your honour. You will always be with us Anne, leading the way.

May you rest in peace.

Tributes to Anne Anne Mawdsley MBE, founder of the RSA, sadly passed away on Sunday 12th October. We would like to send our sincere condolences to her husband, Harry, and all of Anne's family at this time.

There will be a 'Celebration Service' for the life of Anne

on Friday 21st November at 11.00am at St Mary’s Church, Crewe Road, Alsager, Cheshire ST7 2EW www.stmarysalsager.co.uk For further details please contact the office “Anne was a unique and courageous individual who inspired everyone that she met, and who had outstanding vision, ability and tenacity that permitted her to build the Raynaud’s and Scleroderma Association from humble beginnings into the vibrant and effective organisation of today.

She will be enormously missed but leaves an invaluable legacy for future scleroderma and Raynaud’s patients, and for those treating and researching these neglected conditions.”

Professor Chris Denton, Vice-president RSA "There aren’t many women that I have swam with sharks with, dressed up as a penguin for, sky dived with, swam the equivalent of the English Channel for, chatted to an Albino penguin at Bristol Zoo in the middle of winter, sat in an ice chamber with - but I did with Anne!!. She was a great persuader and never one to resist a challenge no matter the cost to her health. Her feats in raising awareness of the RSA are legendary-she was a brave and strong willed women who cared so much about her fellow sufferers. I will miss her."

David Wilkie, RSA Patron "Anne really was one in a million and even raised a "cool million" in the last few years of her life to highlight the problems of Raynaud’s and scleroderma. She was never one to duck a challenge in order to bring the disease to the public's attention and raise millions for research into the cause and treatment of Raynaud’s and scleroderma, and also to help all those who suffered with the diseases. Anne was a tireless champion for the Association and its members for over thirty years, and an inspiration to all those involved with Raynaud’s and scleroderma - both professionals, (who were in awe of her), patients, carers and the general public - we will all miss her" David Scott, RSA Trustee, Chief Medical Advisor NRAS “Anne was an amazing and inspirational lady. Sending my deepest sympathy and condolences to her friends, family and colleagues. May she rest in peace. I was lucky enough to meet her just a handful of times but my favourite memory will be when she came to speak at my 30th Birthday Charity Masquerade Ball. Unbeknown to me, she'd discharged herself from hospital in Chester earlier that day and travelled down to Essex with husband Harry, to talk to my 100+ guests about the conditions that she too suffered. When I found out at the end of the night what pains she'd gone through to be there, I tried to give her a good telling off. Problem was, we had something in common and she asked 'what would you have done?'. . .

I laughed and told her I'd have done the same! Bless her xxx” Facebook message from Nikki Hunt, Friend “It's a real shock to us all here. Anne always managed to find strength and courage in the most adverse situations and always had a positive outlook, it's a credit to her that the charity exists and so much research has been funded to try to find a cure for both these conditions”.

Karen Littley, RSA Colleague & Friend “Anne was a truly amazing person - inspirational, tenacious and courageous - she dedicated her life to doing everything in her power to raise the profile of Raynaud’s and scleroderma with both the medical profession and the general public. She found many innovative ways of raising money for both research into these diseases and to provide welfare help and support for patients. She also had an uncanny knack of persuading people to do things that they would never have considered doing normally! This happened to me when I was convinced that driving a team of huskies across Finland was a brilliant way to raise funds. Thanks to Anne we achieved this challenge and managed to raise over £28,000 by doing so!

Anne will be very sadly missed and her life’s work will live on.”

Jo Kaddish, RSA Trustee & Friend “I have never met anyone like Anne, an extraordinary & dynamic woman who helped & touched so many lives. Anne has made a difference in this world in so many ways. Her fundraising skills and challenges for scleroderma research are legendary. Even after retirement Anne continued her commitment, reaching out to people by developing the Raynaud's and Scleroderma Care and Support website and helpline.

I consider myself very privileged to have known Anne as a friend and colleague. As Annelise RØnnow from Denmark wrote " There is now another bright star to watch over us!”

Kim Fligelstone, Friend & Colleague “In paying tribute to Anne Mawdesley I shall, no doubt, repeat the words of others: Anne was totally single-minded in her dedication to the recognition and treatment of Raynaud's, and also scleroderma - an even tougher task. Both have been little known except to the sufferers and their doctors. Anne's piercing intellect realised that research is the key to understanding and treatment, and that has been the focus of fund raising.

She was supremely successful at encouraging fund raising, but in the process she realised that the sufferers need empathy and contact: she provided this by bringing people together, which the annual conference does. Anne will be much mourned by all those linked in this way.

In addition, Anne helped to break down some of the traditional distance between doctors and patients, so that it becomes a partnership.

She was able to summon up the most eminent doctors and specialists to support her aims.”

Lady Veronica Piercy

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News To all those reading the RSA’s magazine today…

Anne’s death on 12th October 2014 came as devastating news and has shaken all of us in the Raynaud’s and scleroderma community.

When I first met Anne nearly 2 years ago I quickly understood what a pivotal role she commanded - not just as the leader of the RSA, but as a leading light for those who lived with Raynaud’s or scleroderma every day - someone who was compassionate, positive, practical and completely dedicated.

Individuals whom she had helped loved and respected her because of this, as well as for the passion with which she fought for ‘their’ cause, which was also ‘her’ cause… and ‘our’ cause as the RSA. Her knowledge of the conditions as an expert patient was awe-inspiring and she was able to converse equally well with clinicians and health professionals as with patients and families.

Her charismatic character has helped raise millions for research and largely because of her, someone diagnosed with severe Raynaud’s or scleroderma

today will have a very different journey than Anne experienced more than 30 years ago in managing her disease. Her deep sympathy for others with Raynaud’s or scleroderma and her strong desire to alleviate their suffering made her a unique individual. Only Anne, with her many admirable qualities could have founded the RSA with such passion and vision. She made a resolution, she was the first person who picked up the baton and led the field in raising awareness about what it means to live with Raynaud’s and scleroderma. Her triumphs were not just about completing amazing feats of bravery such as swimming with sharks, hurtling round race tracks, bobsleighing down the St Moritz-Celerina run and being in the middle of Lake Windermere in the pouring rain … her achievements were about using those courageous physical activities to inspire and encourage others.

Fundraising for further research and helping others were both her motivation and her dearest wishes.

Anne Mawdsley MBE seized the ‘baton’; we must run still further with what is now a burning torch to continue to illuminate the path, eradicate ignorance and shed further light on these diseases. Such is Anne’s legacy, and challenge to us all.

Elizabeth Bevins

Chief Executive Officer

Did you know that February is officially Raynaud’s Awareness Month? It is a national campaign (better known as RAM) and for RAM 2015 we are encouraging you to ‘LOVE your GLOVES’ to help keep warm in February, which is statistically the coldest month in the UK. As temperatures can vary daily between 10 and minus 15 degrees, it’s important to keep those extremities warm. We want you to help us raise awareness, get involved in some fun activities and raise vital funds for research into understanding the condition and finding new treatments.

Why don’t you get your oven gloves on and host a bake sale? Or put your goalie gloves on and host a charity football match? We have included a leaflet with this edition of Hot News to help inspire you to ‘LOVE your GLOVES’.

Throughout RAM 2015, we will be sharing hints, tips and coping mechanisms that might help Raynaud’s sufferers get through the winter months. Make sure you follow us on Facebook or Twitter to benefit from these, and don’t forget to let us know your tips!

We need you to help spread awareness! We have included two posters with this edition of Hot News and ask that, if possible, you get permission to put one up in your doctor’s surgery and another in your local community, whether that’s in a school, on a village notice board, in your dentist, corner shop, wherever you think it will get spotted and taken notice of the most!

For more information about Raynaud’s Awareness Month, please visit www.raynauds.org.uk/raynaudsawareness-month or contact Head Office. You can donate by texting COLD15 £amount to 70070. The money donated will either be deducted from your credit or be included on your next bill.

Thank you for your support with helping to spread awareness.

Membership renewal occurs at the end of each year. Your membership number can be found at the bottom right of your address on the front sheet. If your membership number has the letter ‘U’ after it, please renew online or you can use the form on the back of your address label. If you pay by Banker’s Order, it will be automatically updated.

We would be grateful if you could renew your membership as your continued support is very much valued and appreciated by us. It will also ensure that you receive future issues of Hot News.

The RSA is encouraging people to order and pay online, or by credit or debit card, if and when they possibly can. This saves valuable time and resources that can be used to help others.

Please remember if you do have to pay by cheque and want to renew your membership and buy products from our shop at the same time, you will need to send in two cheques. Membership cheques should be addressed to “RSA” and stock cheques to “RSA Trading Co Ltd”.

Thank you for your continued support.

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2014 Annual Conference This year’s theme, SHINE ON, demonstrated a ‘spotlight’ approach to sharing information and hearing about the latest news and research into the conditions themselves. It also gave all the delegates an opportunity to learn some self management tips and techniques and experience some treatments whilst catching up with old friends . . . along with making new ones.

After dinner on Friday evening, attended by His Worshipful Mayor & Mayoress of East Cheshire, light entertainment came from our guest speaker & lecturer, Pete Turner, about the science of magic and misdirection.

The conference programme on Saturday included excellent talks from all our speakers. The RSA’s chair, Professor Jeremy Pearson, extended a warm welcome to everyone and talked about the RSA and the Scleroderma Society’s intention to work more closely together in certain areas, for the benefit of those with an interest in both sets of conditions. CEO, Liz Bevins, talked about the changes in the health landscape, charity-giving generally, and most importantly the impact of technology – particularly on communication – which charities must seize as an opportunity rather than ignore. She also prompted the audience to consider how each might use the information they obtained during the day.

an array of views on recent treatments, new research studies, heard about the role of clinical nurse specialists and empowering people to better comanage their conditions with professionals. Questions from the floor were invited and presenters also kindly made themselves available for people to approach them during the breaks.

An extended lunch time break this year allowed people to make the most of the ‘sessions’ on offer and we were also hugely grateful for your generous donations towards our raffle - over the weekend we raised a fantastic £247 towards the work of the RSA. Helen Nutland & Gordon Shelby from the Burton Support Group also gave us a fantastic display of their recent art session for those with Raynaud’s and scleroderma.

For those who stayed for the evening supper on Saturday night we had a guest speaker from Roberts Bakery who talked about the Roberts family having enriched lives through taking chances and seizing opportunities others would dared not have risked – similar to the RSA, one might say!

The following provides a brief overview of topics in the Shine On programme but please contact info@raynauds.org.uk if you would like a PDF copy of the presentations available emailed to you or contact the office with a SAE and we will send out a hard copy in the post.

We were delighted to host internationally renowned speakers whose insight covered Raynaud’s and scleroderma from top to toe! We listened to

L - R: His Worshipful Mayor and Mayoress of East Cheshire, David Scott, Jeremy Pearson, David Teal, Helen Teal

His Worshipful Mayor of East Cheshire opening Friday night

Attendees enjoying dinner on Friday night

The wonderful display of artwork from the Burton upon Trent Support Group

Liz Bevins opening the Saturday conference

Dr Begonya Alcacer-Pitarch, NIHR Clinical Doctoral Research Fellow, Chapel Allerton Hospital, Leeds.

Dr Alcacer-Pitarch gave an enlightening presentation on Podiatry and treatments for Digital Ulcers (DUs) in patients. Leeds has a dedicated DU clinic and helped to develop a DU Patient Diary, now much used by patients, aiming to give control to the person and timely information to the clinician with the aim of more effective treatments.

The presentation looked at the effects of scleroderma on the skin, with it being one of the most affected organs, and how the loss of skin’s biological and mechanical properties can cause the inability to adapt to pressure and friction, leading to ulcers, ‘healing’ tissue problems and possibly resulting in reduced joint function. Dr AlcacerPitarch encouraged speaking to the Podiatrist and/or specialist nurse as soon as symptoms appear and recommended the use of emollients with 10-25% of urea to keep skin supple as well as silicon and gel products to aid cushioning and ease friction.

She also addressed musculoskeletal issues from arthritic inflammation to muscular pain. The type of treatment would depend on the problem that the individual patient presented but might include hand exercises for flexion contractures or insoles to reduce pain and improve foot function for high street footwear right up to prescribed bespoke options. Different types of ulcers were discussed along with their causes, how to prevent and care for them and treatments for when they do occur.

Dr. Steve McSwiggan, Clinical Nurse Specialist, Ninewells Hospital & Clinical School, Dundee Dr McSwiggan divides his working life between two roles - one as a Senior Clinical Trials Manager and the other as a Raynaud’s specialist in the form of a Senior Research Nurse in the Vascular and Inflammatory Diseases Research Unit, led by Professor Jill Belch.

He recommended that all patients with long term health conditions should have access to a specialist nurse to help improve outcomes for patients, whilst being cost effective for the NHS. Dr McSwiggan explained how his role involved both clinics and organ screening. He manages a number of clinical trials in cardiovascular disease, rheumatology and connective tissue diseases and has a special interest in Raynaud’s and systemic sclerosis.

He also runs a DU clinic, provides a Raynaud’s advice line and care for systemic sclerosis patients.

Research also plays a part in his specialist nurse role along with patient education, teaching undergraduates and mentoring. His talk concluded with tips gleaned from patients on managing fatigue, gut issues, upper and lower gastro intestinal (GI) symptoms, dry eyes and mouth. He encouraged everyone to ‘listen to your body’ when assessing and managing symptoms. If you would like further information on hints and tips, do get in touch.

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2014 Annual Conference Professor Jaap Van Laar, Professor & Chair, Dept of Rheumatology & Clinical Immunology, UMC Utrecht Professor Jaap Van Laar talked us through the principles of Stem Cell Research and shared some findings from the recent collaborative ASTIS trial, which has increased our knowledge about the technique. He explained that the treatment was not for every patient and that the treatment is still ‘in its infancy’ but knowledge is developing. He talked about ‘collateral damage to immune cells’, which occurs during treatment and currently has a high mortality rate with many risks. Nonetheless, it is an exciting opportunity for the future and further international collaborative trials are in the offing. Professor Van Laar has written an article for Hot News on page 8.

Professor Chris Denton, Consultant Rheumatologist, Royal Free Hospital, London As our Vice President, we were pleased that Professor Denton could join us this year to present information on current and future treatment options for scleroderma.

He began by summarising the different forms of scleroderma and the importance of classification before focusing on the treatment of the skin and potential immunomodulatory strategies. He reviewed licensed targeted therapies for Pulmonary Arterial Hypertension (PAH) in systemic sclerosis and gave details on the new DETECT ‘Application’ available to clinicians as a ‘risk calculator’ once various diagnostic tests results are inputted and an analysis is given.

Professor Denton mentioned the positive effects of Bosentan on a patient with digital ulcers and renal crisis. There was also exciting news about Zibotentan trials and the benefit of endothelin blockade in mild or moderate scleroderma kidney involvement – part of a Clinical trial called ‘Zebra 1’.

Funding is available for ‘Zebra 2 and 3’ trials. If you want to know more about this or other trials, take a look at www.clinicaltrials.gov. Natural goat serum trials have also produced some positive results but, currently, this is not widely available.

The session concluded with information about the latest treatments for GI issues, which can have a huge impact on the daily lives of those with systemic sclerosis. Posterior tibial nerve stimulation (PTNS) is being trialled in the treatment of systemic sclerosis associated with faecal incontinence. Ending on a positive note, Prof Denton explained that many aspects of scleroderma are treatable with improved therapies and admitted that there are unmet clinical challenges still to be addressed. So, a very different picture than even 5 years ago…

During the lunch break, delegates had opportunities to sample: Keith Hunt’s wonderful massage treatments, personal skin advice from Sasha and the team at Changing Faces, delicious fresh juice samples suggested by Nikki Whitehill, Will Gregory’s hand wax bath and advice on oral health. Astec International (Nanotec) Insoles gave out samples of their new insole with thermal properties for those with Raynaud’s and, of course, a selection from the RSA shop was available.

Another RSA trustee, Professor David Scott, kindly chaired our afternoon sessions and later gave a fantastic summation of all the afternoon speakers.

Astec Insoles

Will Gregory’s wax bath demonstration

Keith Hunt giving a massage to Marie Gray

Raffle winners Terry Warrener and Lorraine Parker Changing Faces

David Scott opening the Saturday afternoon session

Nikki Whitehill demonstrating juices

Dr. Marina Anderson, Consultant Rheumatologist, Liverpool University In the 10 years that she has been in Liverpool, Dr Anderson has established the regional Raynaud's and scleroderma service, which comprises a multidisciplinary clinical service and active research programme.

Dr Anderson gave a comprehensive and engaging presentation on ‘Treatments for Raynaud's Phenomenon - from laboratory to life!’ including the principles of Raynaud’s, research findings on improving its measurement and ways of managing the condition, including treating any underlying disorder and general lifestyle advice. She looked at the first line of ‘attack’, talked us through various medications that open up the blood vessels and improve the blood flow as well as gave mention to 2nd line treatments such as sildenafil and Iloprost.

There is plenty of research going into Raynaud’s and new ‘vasodilators’ (medications that open blood vessels) including a search for better topical treatments that avoid side effects and also a search for prostanoids that do not need to be given intravenously. Marina also touched upon improved surgical techniques, the search for new treatments to treat skin and blood vessel changes along with research into the importance of improving hand function and ways of measuring this. The talk on Raynaud’s was received very well and gives hope to an area that is often secondary in discussions yet can have such an impact on peoples day to day life, if not managed or treated properly.

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2014 Annual Conference Will Gregory, Physiotherapist, Salford Royal Hospital, Physiotherapy - Hand & Face Exercises Will Gregory is a physiotherapist and advanced musculoskeletal practitioner who has been working in rheumatology for the past ten years and has developed a specialist interest in scleroderma. His Masters level dissertation “Rehabilitation for Scleroderma” involved detailed research into the area and he is now running a research trial himself.

His presentation showed that although physiotherapy techniques may not change the underlying pathological changes, or prevent all disability, observations imply that they may improve function by minimising contracture, loss of strength and decreased skin compliance.

Will took us through some of his case studies that proved this to some degree and then looked at therapeutic treatments that may help in managing the conditions, such as the Hand Wax Bath, to increase blood flow, ease pain and moisturise the hands and fingers. We finished off by having a ‘trial’ session as Will encouraged us all to follow facial and oral exercises designed to improve mouth function.

Dr Julia Coakes, Psychologist, The Retreat, York Dr Julia Coakes is a Psychologist by profession and has been living with scleroderma since she was 10. She has managed the complexities of working and living with the condition with a dynamic attitude throughout her childhood and professional career. Her patient perspective on ‘Living and Working with Scleroderma and Digital Ulcers’ highlighted daily challenges faced by many people with scleroderma. Having significant experience of treatment for digital ulcers, she gave us a ‘day in the life of’ overview, which was humorous and heartfelt, as well as touched upon the physical and mental aspects of scleroderma. Many delegates nodded in the room as Julia mentioned something that was akin to their personal experiences and it was fantastic to have a very passionate talk on this topic from an individual so young that has had many years dealing with it.

Susie Hoare, FESCA newsletter editor & Scleroderma Society Trustee - Patient perspective: Tips for people with GI problems Susie is a linguist and works in a Nordic translation company. She is also a keen athlete and loves running, cycling, athletics and triathlons. Susie has problems with slow digestion and Raynaud’s yet tries not to let these things get in the way too much of what she enjoys doing and is always looking for new ways to adapt and make life easier.

Susie was unable to join us for the conference due to completing the London to Paris cycle ride the same weekend however, via video, Susie spoke about self managing several issues and has gathered many opinions from people along the way. With some tips tried and tested, Susie shared a wealth of advice on aiding digestion and dealing with personal aspects of gut malfunction that can cause social embarrassment to people with gut problems.

Susie spoke about dealing with a dry mouth and on what foods to avoid, such as spicy food, mint and dry food, as well as offering some helpful suggestions such as chewing sugar-free gum, using lozenges and making sure to see a dentist frequently. She had various tips for small mouth and chewing problems including purchasing easy grip cutlery, adding sauces to food and drinking lots of water to aid eating.

Susie suggested foods that may hinder slow digestion such as cheese, tomatoes, acidic foods, leafy and raw vegetables as well as touching on foods that are good like lots of low fat yoghurt, tofu, white meat instead of red meat, pureed foods and soups. There were some hints on controlling reflux such as eating smaller meals more frequently and not to lie on your right side at night. There were some tips on constipation and incontinence and Susie mentioned a really useful website from where you can download a toilet card to save any embarrassing moments, created by Bladder and Bowel Foundation: http://www.bladderandbowelfoundation.org/resources/toilet-card.asp The conference was a great success again this year. ‘The standard of speakers was excellent and we are so grateful to those who gave up their time to come to the conference and share their research and findings, hints and tips’ said Tracey Spray, who helped implement the conference for 2014. ‘The lunch time sessions worked really well, the feedback and thanks we have received has been wonderful and extremely rewarding for all the team involved here at the RSA’. Sentiments echoed by the RSA trustees, the CEO, Liz, and the rest of the RSA team.

ALAN GOLDING We were very sad to hear that one of the RSA’s first trustees and a very early member of the Association died in September this year. Alan Golding was fondly remembered by Jo Kaddish (an RSA trustee who served with him and remains on the Board today) as a man with a great sense of humour and who always had a firm hand on the tiller regarding financial matters. He was a great supporter of the Association and attended as many RSA events as he possibly could. His company dealt with payroll issues for the charity in the early days, and this continued even after his retirement. Alan was a systemic sclerosis patient at the Royal Free, originally under Professor Dame Carol Black (RSA’s President) and most recently under Professor Denton’s care. Alan always bore his condition stoically and without complaint and the charity has much to thank him for. Our condolences are with his family and many friends.

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Doc Spot Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

If you have a question you would like Professor Chris Denton to answer, send it to Head Office or email info@raynauds.org.uk with Doc Spot in the subject heading. Thanks!

Q: Please can you advise on how best to treat and prevent dry, flaking skin on my forehead, which is now spreading onto the rest of my face? It is extremely sore and painful and is a vicious cycle of hard, dry, flaking and peeling to redness. Your advice would be greatly appreciated.

A: Scleroderma can be associated with dry skin as the affected areas often lose the sweat glands and other structures that maintain normal texture. In addition, it is possible to develop dry and flaky skin due to related conditions, such as dermatomyositis or lupus, that can occur in overlap or mixed connective tissue diseases. Other causes include superficial yeast infection. In general it is important to use hydrating or moisturising preparations that help dry skin from all causes. If this is not sufficient you should discuss it with your doctors or specialist nurse in case further tests or a referral to see a dermatologist is appropriate.

Q: I have recently noticed that the shape of my eyes are changing...the skin at the corner of my eye appears to be stretched. Is this normal with scleroderma and is there anything that can help prevent this from getting worse?

A: Scleroderma causes thickening and tightening of the skin in affected areas and also later leads to thinning of the fat and muscle layers under the skin. This can affect the face and sometimes the skin around the eyes becomes tightened. In general, facial exercises can be used to try and maintain movement and the skin should be kept hydrated with regular application of moisturiser, as the skin often becomes abnormally dry (see above).

Q: I recently heard of silver cream. What are its benefits and where can I get it?

A: There is a very useful silver containing cream called “silver sulphadiazine cream” that is used for the treatment of skin infection and this can be useful in some digital ulcers on the fingers in scleroderma. It is also called Flamazine®. There are also silver impregnated dressings that can help treat skin ulcers. Silver in these treatments helps to treat infection but you should discuss with your doctor or pharmacist before using, as some patients have allergic reactions or can suffer toxicity. Although there are several other topical preparations available that contain silver, described as “colloidal silver” these cannot be recommended without more evidence of benefit in clinical trials. There is no evidence that they improve scleroderma skin.

Q: I have been a member for many years and I suffer from what used to be called CREST. I have several difficult symptoms but recently I found I had a longish lump on my lower leg (just as if I had been wearing tight socks, but I haven’t). There is a longish mark where this lump occurs. It is not painful and I only discovered it by accident. I have shown my doctor and she wondered if it was to do with thickening skin due to my condition, but she is basically a bit baffled. Have you heard of others getting this sort of thing? Any ideas?

A: In scleroderma, of all types, there is thickening of the skin and this occurs in distinct patterns and distribution depending upon the subset or type of systemic sclerosis or localised scleroderma. Lumps on the leg in a patient with limited cutaneous systemic sclerosis (the type of scleroderma also called CREST, especially in USA) could be due to a localised area of scleroderma developing or to calcified material being deposited under the skin (calcinosis). It is also important to consider that it might be an entirely unrelated process from scleroderma. I am sure these are things that your doctor has considered but sometimes further tests such as an X-ray, ultrasound scan or biopsy (small sample taken from the lump) are needed and you should discuss this with your doctor.

Q: I have systemic scleroderma and things were looking up, having been taking Methotrexate, but just lately I am having really bad mood swings and keep crying. Is this normal?

A: Methotrexate is a very commonly used treatment for rheumatic diseases including rheumatoid arthritis and also used in scleroderma.

It may be effective in both localised and systemic forms of the disease and has been demonstrated to be beneficial in clinical trials. Other immunosuppressive drugs are also used such as mycophenolate mofetil or cyclophosphamide and your doctors will decide which treatment is best for you depending upon the pattern and extent of scleroderma. Once the disease stabilises or improves it is often possible to reduce the dose or stop methotrexate. It is common to have emotional changes in scleroderma, like any severe chronic disease that impacts on function and quality of life. Some treatments, such as steroids, can also affect mood and lead to “mood swings”.

If necessary you should discuss this with your healthcare team as it may be useful to consider what direct treatment approaches for these broader aspects of scleroderma are available.

Q: Has any research been done on natural pain relief without side effects or harming prescribed pills?

A: We encourage all of our patients to try vitamins and other supplements that might benefit various aspects of scleroderma and Raynaud’s phenomenon. Scleroderma specialist nurses can often give very helpful advice about supplements and vitamins to try.

However we advise that this should be in addition to more standard treatment approaches as “complementary therapy”. There are some clinical trials supporting use of treatments that work as anti-oxidants or modify blood vessel reactivity. Unfortunately it is generally difficult to undertake clinical trials of what might be termed “natural remedies” in scleroderma as well as other conditions because design on support for clinical trial is especially difficult. I am not aware of any specific research looking at “natural pain relief” in scleroderma although the field may draw on results of research performed in other medical areas if it is persuasive.

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Stem Cell Research Stem Cell Research: No Science Fiction

By Jacob M van Laar, Professor and Chair Dept of Rheumatology & Clinical Immunology, UMC Utrecht, the Netherlands.

Honorary Professor of Clinical Rheumatology, Newcastle University, UK.

Stem cell therapy (SCT) has been used for decades to treat patients with malignant diseases. In this setting, stem cells are either obtained from the blood or bone marrow of healthy donors (so called ‘allogeneic SCT’) or patients themselves (referred to as ‘autologous SCT’). Although it looks more attractive to use stem cells from healthy donors, there are risks involved with allogeneic SCT due to the possibility of the stem cells being rejected by the recipient or the recipient being attacked by donor cells. This is related to genetic differences between recipient and donor. Clinical studies have shown that autologous SCT can also stop progression of autoimmune diseases including systemic sclerosis.

Processing of stem cells from peripheral blood graft reinfusion of blood into leukocycles

During the first step patients receive a high dose of cyclophosphamide (a chemotherapeutic drug) via infusion into their veins, followed several days later by an injection of filgrastim (‘G-CSF’, a synthetic growth factor for white blood cells). This combination of drugs will drive stem cells, which normally reside in bone marrow into the blood stream, (hence the term ‘mobilisation’) where they can subsequently be isolated from by a procedure called ‘leukapheresis’. This stem cell preparation is then processed in a laboratory and frozen down in a freezer until further use. The second step takes place several weeks later and requires a stay in hospital for the patient. For several days, high dose cyclophosphamide is again infused, in combination with a protein (‘antithymocyte

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globulin’ or ‘ATG’), which kills immune cells. After this, a reinfusion of the stem cell preparation takes place, which has been thawed prior to use.

The whole aim of SCT is to eliminate as many immune cells as possible so as to create a ‘clean slate’ for the re-infused stem cells to generate a new immune system, which is no longer autoaggressive. Several research studies have shown that this does happen, although the results obtained in pilot studies were not ‘black and white’. The use of high dose cyclophosphamide and ATG carries risks, some unavoidable (temporary hair loss and female infertility), while others can be pre-empted (nausea, infections and bleeding). Patients with systemic sclerosis in particular are at risk of serious complications (sometimes fatal) due to the fact that their heart and lungs are often affected by systemic sclerosis. Therefore, it is critical that patients are only treated when the intended benefits of SCT outweigh the risks and this decision must be made in light of the available information about the extent of a patient’s disease.

The recently completed international ASTIS-trial is the first clinical trial to unequivocally demonstrate that systemic sclerosis patients treated with SCT have a better survival than those treated with monthly pulse therapy cyclophosphamide.

In order for patients to participate in the trial they had to be less than 60 years of age, have early diffuse cutaneous systemic sclerosis with a maximum disease duration of 4 years and not have too severe a disease, as this would put them at a too much of a risk of complications. Despite these precautions, 10% of patients died from complications of SCT versus 0% in the cyclophosphamide group. Complications were more common in patients who had a smoking history.

Yet, despite this sobering fact, long-term survival was significantly better in the SCT group, notably those who had never smoked. Effects on skin thickening, functional ability, quality of life and lung function were also better in the SCT group.

The key lesson from this clinical trial is that early, intensive treatment of systemic sclerosis patients who are at risk of disease progression can arrest the disease, thus improving prognosis. Further studies are needed to determine whether SCT should be offered as first-line chemotherapy or rather as rescue treatment for patients who do not sufficiently respond to pulse therapy cyclophosphamide. SCT is an expensive treatment modality (around 30k), which can only be offered in specialist transplant centres. Fortunately, the good news is that most systemic sclerosis patients will not need SCT but, for those that do, it is now available in the UK for those who need it.

Patients Perspective Patients perpective of undergoing stem cell transplant My name is Katrina and I served in the British army 1999-2004 as a Combat Medical Technician. Life was hard and frenetic. Feeling ill with a variety of symptoms including increasingly severe Raynaud’s, it wasn’t until April 2008 that I was diagnosed with scleroderma. At that time my skin scored about 28 (that’s poor), I suffered from carpal tunnel syndrome, inflammation and painful joints, with Raynaud’s to boot. I was stunned, disorientated, angry and despite the fear factor, wanted to know as much as possible about scleroderma and the latest treatment, whether it could be ‘cured’ or not. My lungs became involved with a diagnosis of Interstitial Lung Disease (ILD) in October 2013.

Things were happening so fast, too fast, and my husband and family, as well as myself, felt desperate.

From the second I heard that Stem Cell Transplant (SCT) therapy might be available I researched all I could about it. The more I discovered, the more I believed it could help my situation…and I knew I wouldn’t stop until I had tried everything to get it. For me, it was the hope I needed and I realised it was, and remains, NOT an ‘easy option’ but I also knew that if I had the opportunity for SCT, for me the risk was worth taking.

The risks of dying were, and currently remain, high and the application of the techniques on autoimmune disease generally, and scleroderma in particular, are still in their infancy. My research revealed that it isn’t suitable for everyone with systemic sclerosis and there is a fine balance undergoing a SCT early enough in the hope that you are strong enough to survive…and leaving it late enough that the risk is worth taking! This decision on timing has to be the individual’s, working with a trusted and knowledgeable doctor…and, of course, it is a conversation to be had over and over and over with family, friends …and then the doctor who will perform the transplant and look after you throughout the whole, lengthy process.

Living in the UK there were no trials in which I could take part when I began my quest and so, for a variety of reasons, the doctor for me was Dr Burt in the USA. I spoke with several of his former patients who had already undergone SCT and found that I liked him and his passion for his work. He has been working for 14 years, and on 23 autoimmune diseases, to create this stem cell transplant treatment. Before that, he worked on stem cell transplants in the leukemia field. I looked at the Lancet - an article from July 2011 - and talked to two people who had gone through it two and four years earlier. I also read the blogs of three or four more previous patients. Then I was comfortable enough to move forward.

In 2012 the disease progressed, time was against me as things became critical. My heart was showing signs of fibrosis and stiffening and undergoing SCT with a stiff heart is a nonstarter because of the fluid that is required to perform it. I had to raise £125,000 to pay for the transplant. I feel very fortunate because I have many very dear friends who all rose to the challenge and helped me. The support was overwhelming but there was so much red tape to unravel it was a hugely frustrating time too. For example, opening a bank account for me but NOT in my name took 9 months to be cleared by the authorities as ‘non-fraudulent’ as I wanted to account for every donation! Releasing medical documents, insurance,

flights, accommodation, organising events were all hurdles to overcome.

It was the most hectic time of my whole life and when I wasn’t sure I could carry on I remembered that I was truly ‘fighting for my life’.

I began interacting on social media, contacted newspapers and made contact with the RSA. I was often asked who was running my campaign and the answer was “me”. I didn’t want anyone else to have to face this and I wanted to help others trying to find out about treatment options, so set up ‘Katrina’s Future’ and with the support of Help for Heroes, and many others, I raised the necessary funds.

The pros of having SCT, from my perspective were: • My disease would have a 75% chance of halting progression - MY MAIN GOAL • That would increase my life expectancy significantly • My lungs had a chance at improving significantly - ICING ON THE CAKE • Others were feeling very well and resumed many of their old activities after SCT, including running! A BIG INCENTIVE FOR A PREVIOUSLY ACTIVE WOMAN The cons were significant: • It could be a life ending procedure. See the Lancet January 2013 “It’s a Matter of the Heart” • 25% chance of SCT failing to halt the disease • Procedure could not be done in the UK and it would be a long time commitment. Three months in Chicago plus 100 days of very limited exposure to the outside world • Feeling very ill due to the chemotherapy - worst ever flu and more • High financial cost and short time to raise the necessary funds 23 April 2014 - I was in the USA and the day had finally arrived! When I was admitted to start treatment I had 7 people sit with me for the first day. One of those was my husband, 4 were pioneers themselves and 2 were carers of pioneers. I can’t put into words how much that meant to me. For me the actual transplant proved the easy part - no major issues - not what I expected and I know I was extremely lucky and probably unusual.

And what next? I keep a diary of how things are going: 50 days in - feeling great! My goal was always to stop disease progression, not necessarily to improve my current condition.

My skin is softer, skin and joint swelling reduced and slightly more movement, aching joints and tendons are nearly gone, digestion and eating has improved - no longer reacting badly to red meat and gluten.

Showering no longer wipes me out for the day…

But I’m still often fatigued and have hot and cold flushes much of the time… and I’m sick easily when introduced to new people and animals.

100 days in - I feel so much better than I expected to!

Continued skin improvement, decreased medication including for Gastro issues, blood pressure and pulse within normal range, no more stomach bloating, my digital ulcers have finally healed after 4 years, although Raynaud’s still remains a huge problem. Fatigue is less of an issue than before and I have hot flushes.

Doctors cannot claim a ‘cure’ and the aim is to halt the progression of disease, if possible. For me it was more successful than I could ever have hoped for. This treatment isn’t suitable for everyone and there is a ‘window of opportunity’ when it can even be considered... so I’m humbled and thankful and know just how lucky I am.

Katrina,

October 2014

09

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11

Personal Story Hilary Stanfield is a long-standing member of the RSA She was asked to give a talk on her story at the Salford Royal Hospital Scleroderma Day event. The RSA were in attendance and thought that Hilary had such a positive outlook that her story would make a great addition to Hot News. Thanks to Hilary for letting us share it . . .

I don’t want to be patronising as I know that the Hot News readers have different degrees of the disease, but I am sure parts of my story will be familiar to many of you and might help those who are just starting on this journey. I am going to talk about my own personal circumstances, how it has affected me and how I have managed to live with the condition.

My name is Hilary Stanfield, I am 68 years old and married with 4 children. I retired when I was 65 years old as an assistant headteacher of a large primary school in Bolton. I have Raynaud’s and scleroderma, which affects my hands, tongue, feet, digestive system and I also have high blood pressure and some heart and lung involvement.

The first time that I can remember seeing Raynaud’s was in the early 1950s when I saw my father coming out of the sea at one of the coastal resorts in South England. I can picture him now, he had some fetching maroon wool-type trunks on and as he walked out of the sea, his hands were completely white. I’d never seen anything like that before but, being young, I thought perhaps that what all dads’ hands looked like!

I played a lot of hockey, particularly at secondary school, and, of course, it’s a winter sport so on those chilly match mornings my hands would remain cold the whole time through the game. By half time everyone else was hot and sweaty whereas my hands were always blue, or orange at that point, but I refused to give up something I loved. When I was in my early twenties my hands started going white and very painful when the blood rushed back.

In the 1980s I had an incredibly sore thumb and it ended up with this white stuff coming through the top of it. It was quite a large amount and I just didn’t know what it was. It was hard, just like a piece of chalk and I actually played a tune on the table with it! I went to see my GP but she had never seen anything like it before. All she could advise was that I shouldn’t fiddle with it or it might get infected. With hindsight, this was really good advice because as we all now know once you have calcinosis popping out you can develop an ulcer, which can be extremely painful.

Eventually I was seen at Bolton hospital where I was diagnosed with scleroderma. I was told at that stage, (we’re talking about the earlier days now) that it could be “life limiting”. There wasn’t much information available at all at that time and I thought, “Is it going to progress? What is it?” I returned home and thought, well, I’ve got 4 children, I’m teaching full time… it’s a case of just getting your head down and getting on with it and hope for the best. Back in those days, cars had plastic steering wheels that were icy cold in the colder months. Dropping the children off at school would make your hands so so cold that, despite wearing gloves, by the time you got to school you were nearly crying and afterwards were hunched up next to a radiator trying to thaw them out. I must admit on some occasions I did a naughty thing and put my hands in warm water to warm them up, which I knew that you weren’t supposed to do! I thought at the time that I was glad I had an indoors job, there was no way I could have a job on Bolton fish market!

In the 1990s I was seen at Salford Royal Hospital and given battery operated gloves. If you aren’t familiar with these gloves in the early days, let me describe them. There was a huge battery (it was the size of a small car battery!) that you would wear around your waist from which wires went into the gauntlet-like gloves. If you wore them when out walking, you got so tired quickly as the battery was so terribly heavy but I kept telling myself that at least the doctors were trying their best! There were times when my hands went white and I hadn’t even noticed. I remember one of the children in school saying to me, “Mrs Stanfield have you got a plastic hand?”

How things have changed since those days. Salford Royal Hospital has a wonderful team under Professor Herrick, including Liz Wragg’s ulcer clinic and all the technicians. I’ve had three operations on fingers to remove calcinosis because my fingers were getting infections. They meant no washing up and no cleaning up sick at school etc, so there were advantages!

My surgeon, Mr Muir at Salford Royal Hospital, and interventions there, were brilliant and I always call him my hero. I remember one of his team didn’t know a lot about scleroderma because quite a lot of people don’t, do they? He mentioned to me (which I’ve never heard elsewhere) that “If the finger is not viable, some, or all, of it may have to come off.” I instantly thought of my teaching job and the young children I taught because ‘1, 2, 3, 4, 5, once I caught a fish alive 6, 7, 8, 9, 10’ wouldn’t really work with 9 fingers! Nowadays we are much better off. We have the internet which is brilliant, isn’t it?

It helps us to feel that we aren’t alone and don’t have to suffer in silence. We also have the RSA and Hot News, which features people talking about their problems. We’ve got drugs for our digestive problems and high blood pressure, which also helps Raynaud’s, we’ve got better ulcer treatment being tried and researched and hand warmers! Every year I always buy a box of hand warmers for winter, but we had a rather mild winter last year so I’ve still got some left! I also use sheepskin gloves, but make sure they aren’t too tight as that restricts circulation, and I always remember to warm them on the radiator before I go out.

The family links I have are interesting. As I mentioned, my father had Raynaud’s but I will never know if he had scleroderma or not. I have two sisters, one with rheumatoid arthritis and one with mild Raynaud’s, and my son has a rare autoimmune disease, which is a form of vasculitis. In fact, four years ago we were really worried about him but of course there are new treatments always on the way and there is a specific drug now and he is fine. So there you are, research does a lot for us doesn’t it? I think I’ve always been a very positive and active person and being at school has kept me on my feet most of the time. I think that it’s really important not to let the disease define who you are: you are who you are and not the disease. I actually tried skiing a few years ago and expected it to be too cold but in fact it was fine, with the right gear you can manage it. I still enjoy walking, but only as long as there are toilets along the way!

I go to aerobics and Pilates weekly. I have more time for Pilates in particular as we always do stretching exercises, which is good for scleroderma and it has made me fitter. I think it’s important to have a sense of humour. I now have a small mouth but all my family have rather large mouths so of course I get laughed at as I can’t eat as quickly as them or things that are really quite large!

So my thanks again to the team at Salford Royal who are only too pleased to help us and I wish them every success to their continuing research programme.

Thank you 12

A Plan For All Seasons Will Gregory (previously mentioned in our conference piece) is a Specialist Rheumatology Physiotherapist & Advanced MSK Practitioner at Salford Royal Hospital. He wrote an article about preparing for winter and it was originally printed in the Scleroderma Society’s October 2013 newsletter. The Scleroderma Society have kindly let us reprint it, hopefully you will find it useful . . .

As the weather starts to change this time of year, naturally our minds turn to the issues of the autumn and winter ahead. This is especially true if you are affected by Raynaud’s phenomenon.

The risk of exposure to the cold, and the consequent episode of Raynaud’s, is higher as the weather starts to get cold outside.

Some simple measures can be undertaken towards preventing attacks of Raynaud’s during colder weather and in the long term too. Keeping as physically active as you are able will help in the longer term as it has been shown that regular physical activity helps to prevent vasospasms by increasing blood flow to the area and strengthening arterial walls. Knowing which type of physical activity/exercise to perform can be difficult. The exercise you choose should be sufficient to work your heart and lungs but not so strenuous that you feel short of breath or experience pain, either during or a day or two after the exercise. With the colder weather it is better to plan indoor exercise; this could be at a gym, it could be by using exercise equipment in your home, simple chair or bed based exercises or even just walking up and down the stairs regularly.

There are some specific exercises that have been recommended - wriggling the toes, tapping the foot, clenching the fist and moving the arms are all sensible to encourage blood flow to the peripheries. Making large, overhead circles with the arms has been recommended but similar benefits can be achieved by the more manageable and far safer technique of pendular swinging. In pendular swinging you lean forwards, perhaps with the non-working arm rested on a dining table or kitchen worktop, and allow the other arm to dangle. You can then swing it in a pendular action from side to side, from front to back or in a circular pattern. Performing fist clenches at the same time will increase the beneficial effect. The fist clenches could be around a soft ball that fits into the hand. To increase circulation to the toes and foot, toe tapping can be helpful, for better effect though do try to get some calf muscle work at the same time; this can be achieved by pushing to stand on tip toes. For those unable to tolerate this exercise in standing it can also be performed in sitting.

As Raynaud’s attacks can be related to stress, exercise/regular physical activity has a further preventative function in that it is known to decrease stress levels and release pent up frustrations. Just be careful not to get more pent up, anxious or stressed if you find you struggle to perform as much exercise as you’d like – due to either a busy lifestyle or non-compliant body!

Some care should be taken in choosing clothing to exercise in as garments that are tight around the wrists or ankles can worsen the peripheral bloods supply. Extra layers of clothing are strongly recommended in the colder weather as would be heated gloves, silver gloves, or even simply a second pair of gloves over your usual pair. Warm, thick socks are also sensible but do be sure to check for any irritations post exercise as the potential development of skin breakdown or ulcers should be monitored closely if you plan to increase or change your physical activities/regular exercise habits. Local ways of heating the hands or feet could also be recommended, this would include a hot water bottle, microwaveable wheat pack, heat lamp or paraffin wax bath but do be very careful if you are planning to commence treatment with any of these heat methods, read the instructions carefully, consider if your hands/feet are suitable for such treatment and seek medical advice if you are unsure.

Finally, do be mindful of the need to keep active to reap the benefits as the frost starts to thaw and getting outside becomes more manageable. The exercise work that you put in indoors over the winter will pay off in the control of your Raynaud’s, your general fitness and your ability to do what you want and need to do. It is a “use it or lose it” situation!

Have you signed up to our Facebook and Twitter pages to hear all that is going on?

We share hints, tips, stories, articles, anything that you might like to read! You can follow us here: raynaudsandsclerodermaassociation

@raynaudsuk

13

Fundraisers Thank you to all of our wonderful fundraisers, we truly appreciate each and every one of you!

Alex (7) and Ruby (5) ran the “We Love Manchester Toddler Trot” in memory of their uncle Kevin Kendall and raised £75!

Rich Brodie ran the Ring of Fire, a 135 mile run on Anglesey, and raised £725

Nicolas Parker did a skydive and raised over £2,000!

14

Louise Adamson took part in a 5k fun run with her son and raised £250

The Odd Sock charity dance raised £78

Nicole Martin’s skydive raised £500, pictured with a friend’s son, Matthew, who has Raynaud’s and scleroderma

Dave Leigh ran the Great North Run in memory of Paul Richardson and raised £311

Avril Braidwood celebrated her 80th Birthday and asked for donations to the RSA instead of presents, raising £600.

Happy Birthday Avril!

Joe Carter did a couple of carboot sales and raised £285 in memory of his late wife, Valerie

Fundraisers Rob Drake cycled a 130km mountain bike cycle in Wales and raised £571.

To do this he: • Pedaled for 10.5 hours solid • Cycled 84 off road miles • Climbed 9,600ft • Burnt over 2,500 calories Well done Rob!

Rosemary Chalk was a life member of the RSA who sadly died in January 2013.

Although she suffered with scleroderma for many years, this did not stop her fundraising for the RSA. 12 years ago, Rosemary’s sons organised a cycle ride with some friends, which then became an annual event. The last cycle ride in 2012 had nearly 80 cyclists and had become a real family event, with 20 of the cyclists having taken part every year.

Everyone was devastated when Rosemary died and the heart of the cycle ride was gone. One of Rosemary’s son, James, has told us that many of the cyclists want to continue with the cycle ride, albeit on a smaller scale, in memory of Rosemary, and in support of the RSA. Thank you for everyone’s support.

Poppy Ramsden cut off her ponytail in memory of her mum Helen. She raised £900. Her hair was sent to a charity that makes hairpieces for children who have lost their hair through illness.

L - R: Les Argent, Caroline Rabjohns, Shirley Lynch, Liz, John Lynch

The participants of a cricket match at Chatsworth House in memory of Paulette McDonald raised £290

Thanks to those at the Pershore Plum Fayre who raised £120

Thanks also to the following: Archway School who held a non-uniform day Fred Huet, Alex Chilton and friends who cycled from London to Barcelona Brenda Holden for walking the Wirral Coastal Walk Adam Mackenzie who ran the tough mudder Scotland The Aberdeen Intertek office who held a ceilidh Inner Wheel Club of Felixstowe who nominated the RSA as their charity of the year Iris Guscott for book sales Joan Walton for hosting a football match in memory of her son, Robert Heather Lee for hosting a bingo night Colin and Georgina Finlayson for asking for a donation to the RSA instead of wedding gifts. Congratulations on your wedding!

Christine Cliff for various activities at a holiday park The Abbey Church of the Holy Cross, Pershore, for hosting a concert And lastly thanks to all the brave souls who decided to do an ice bucket challenge on our behalf!

If you feel inspired by these wonderful fundraisers, and would like to fundraise on our behalf, please get in touch! We can support you throughout your fundraising endeavour and every penny raised truly counts to us 15

New Year’s Resolutions 2015 is fast approaching us! So have you started to think about a New Year’s resolution? We have listed a few ideas below for those with Raynaud’s. Let us know if you do any . . .

O SMOKING! On top of the dangers of smoking, did you know that it narrows blood vessels even more and makes Raynaud’s worse?

Not only that but it can also lower the temperature of your body by up to one degree for a twenty minute period after, so why not make it your resolution to stop, or encourage friends and family to stop?

XERCISE! Why not try a new sport or go for a nice swim? Not only is exercise a good way to improve overall health, as well as a fantastic way to release those feel-good endorphins, but it helps to stimulate circulation, which can be good for Raynaud’s. If you are concerned about starting something new, speak to your GP beforehand.

EAR GLOVES! In environments that might trigger Raynaud’s, for example cold weather or the dreaded refrigerated section of a supermarket, wear gloves. It is sensible to be prepared and carry a spare pair with you and also leave a pair in the car too, just in case!

OU COULD HELP TO RAISE AWARENESS! Why not help spread the word about the massively under-diagnosed condition, Raynaud’s? A lot of people who suffer from Raynaud’s don’t even know that they have it as they aren’t aware of the condition. What’s more is that we don’t even know how many people have Raynaud’s in the UK, but it’s predicted to be up to ten million!

NGAGE WITH OTHERS! If you have Raynaud’s and/or scleroderma you’re not alone. You don’t have to suffer in silence. If you would like to get in touch with someone, we have our local member support contacts who are available for a chat or how about contacting head office? We can put you in touch with local members who might be feeling the same!

RRANGE A FUNDRAISER! Fundraising for the RSA is a great way of helping to raise money for research into Raynaud’s and scleroderma. If you have a fundraising idea, whether it be from cake making to climbing Kilimanjaro, we can help you achieve your goal. What better way to make a positive impact in the New Year?

EGULAR CHECK UPS! Make sure you see your doctor and dentist regularly to ensure you’re as a healthy as can be so that you can continue to achieve all of your goals (and your New Years resolutions!) and have a fantastic year!

As you are probably well aware, the RSA is lucky enough to have a group of ‘Member Support Contacts’ who help us to offer reassurance to those with Raynaud’s and scleroderma locally. It is a successful support system and helps to reduce feelings of isolation commonly felt by those with Raynaud’s or scleroderma.

We wish to offer a network of support around the whole of Great Britain and are eager to expand our current contacts. We are looking for members who are willing to volunteer a small amount of their time to help others in North Wales and Glasgow. If you live in any other area not covered by our current system and would like to volunteer please also get in touch. You can help others locally over the phone, via email or, even by getting together for a cup of tea, it is entirely up to you.

The RSA will assist you by supplying literature and guidance when you begin and we are only a phone call away should you need any further help! You don’t need any qualifications or experience, just the willingness to listen.

For more information, please contact Head Office on 01270 872776

16

Contacts NURSE ADVICE LINES Royal Free, London

Sally Reddecliffe & Adele Gallimore (For Pulmonary Hypertension Enquiries)

020 7472 6354

Royal Free, London

Specialist Nurses

020 7830 2326

Bath

Sue Brown

01225 428 823

Manchester

Specialist Nurse Team

0161 206 0192

Leeds

Specialist Nurse Team

0113 3923 035

Liverpool

Jan Lamb

0151 529 3034

Newcastle Upon Tyne

Karen Walker

0191 223 1503

Belfast

Audrey Hamilton

02890 561 310

Portsmouth

Paula White & Julie Ingall

02392 286 935

Sheffield

Jayne McDermott

0114 2713 086

Brompton

Lucy Pigram

0207 352 8121 Ext no 7112

Dundee

Steve McSwiggan (Available Mon, Tues & Weds am)

01382 383 233

The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice.

The nurses who run the advice lines also have very busy schedules and therefore it is likely you will get an answerphone message where you can leave your details for the nurse to get back to you.

MEMBER SUPPORT CONTACTS Bedfordshire Burton on Trent Bristol & Bath S. Cumbria/N. Lancs East Anglia Eastleigh Fife Lincolnshire London London, NW Manchester Merseyside North East North Yorks N. Ireland Portsmouth & S Hampshire Southport Surrey West Yorkshire Worcestershire

Rita Boulton Helen Nutland Margaret Goff Ruth Randall Jacky March Kathy Allen Rose Bevan Elenid Matthews Ruta Rackaityte Marilyn York Gill Holden Helen Lingwood Jessie Pickering Tony Overend Patience Bradley Alison Wright Nikki Whitehill Fay Collings Lynne Lister Shirley Lynch

01767 312 544 01283 566 333 ext 5247 01454 310 225 (members only please) 01524 903 493 peteruth@talktalk.net 01394 286 637 02380 610 678 01382 552 272 07854 219 961 07702 245 068 rcktyt@yahoo.com 01923 286 780 01942 877 259 0151 280 1194 jonandhel@sky.com 01388 527 840 01423 862 551 02890 592 370 patiencebradley@gmail.com 02392 367 960 01704 550 580 nicola.whitehill@hotmail.co.uk 01737 762 005 07720 208 597 01386 553 392 slynch@uwclub.net

Please always use the current version of Hot News for the correct contact information.

If you would like to be a local contact, please get in touch with us!

17

Did you know?

Edgar Stene Prize Congratulations go to 36 year old Marinka Stein Due Sørensen from Denmark who won the 2014 Edgar Stene Prize.

GKA is an independent market research agency and has been conducting market research in the medical sector for over 20 years.

Every year EULAR and the Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) offer the Edgar Stene Prize for the best essay on a previously determined topic.

They are currently conducting a research project called “Systemic Sclerosis” which aims “To discuss the topic of diffuse systemic sclerosis to better understand the impact the condition has on people’s lives and in particular people’s thoughts and feelings about the condition.”

The theme for 2014 was “Vision 2043 – my ideal world for people with a rheumatic or musculoskeletal disease.”

People with rheumatic and muscoskeletal diseases were invited to write about changes they would like to see to improve their lives to create a better world for people with these diseases in the future.

If you would like to participate they would need just 6 hours over the course of a week, which will involve a face-to-face interview, creative tasks and video diary entries. All participants will be paid £275.

Edgar W. Stene was born on 19 November 1919 in Sarpsborg, Norway. Stene, a naval mechanic who developed rheumatoid spondylitis, performed the work of a pioneer, which has benefited thousands of rheumatism sufferers. He was a member of numerous committees and furthermore played an important role in Scandinavian and international organisations. Edgar W. Stene recognised the need to unite rheumatic patients in a special organisation in order that all matters concerning them could be dealt with in the most effective way possible.

The full essay, “Dancing Down the Road of Life” can be read here: http://www.eular.org/index.cfm?framePage=/awards_stene_ prize.cfm The 2015 essay title is “Taking control of my life: working together with health professionals to achieve my personal goals.” Anyone with a rheumatic or musculoskeletal disease aged over 16 is invited to enter. The essay should be no more than 2 A4 pages and must be submitted by 31 December 2014. The winner will be invited to attend the Opening Plenary Session of the EULAR Congress in Rome where they will be awarded €2000. More information can be found at the link listed above.

Calling all Health Professionals!

Contributions from Health Professionals for future issues of Hot News are always welcome. If you would like to write a piece, please get in touch! Thank you!

If you would like to share your personal story, art, poem or creative talents in the next edition of Hot News, please get in touch.

THANK YOU!

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If you would like more information please email tracey@raynauds.org.uk Thank you.

Footcare tips To prevent chilblains occurring, keep warm at all times and wear several layers of thin, loose clothing rather than one thick layer.

If you have chilblains, cover them with a loose, dry dressing and try to avoid clothing that rubs.

Even as an adult, your feet can change shape. If you are wearing footwear that doesn’t properly fit, you might get blisters or sores.

If you get your feet measured, make sure you get them sized when you are standing up as well as sitting down as this can affect your foot width.

If you suffer from dry feet, you could try taking a bath containing an emollient bath oil and also use a moisturiser on the area, possibly lanolin free if you are sensitive to it.

Sheepskin lined boots can keep your toes really toasty!

See a Podiatrist to keep your feet in the best shape.

Recipes In Volume 29 of Sjögren's Today, the British Sjögren's Syndrome Association (BSSA) published a couple of recipes of dishes for a dry mouth. The BSSA have kindly let us reprint these. If you have your own recipes that you find are both delicious and help with a dry mouth, please do send them in to us.

Lemon Mousse by Elizabeth Lickless

Seafood Risotto by Pat Jenkins

1 lemon 1 tub of Greek yoghurt Lemon curd

One sliced onion Two sliced mushrooms Half a sliced pepper 500g fresh salmon 235g seafood selection (eg prawns, crabsticks, mussels) 2 teaspoons of fish sauce 1 large tin of chopped tomatoes Dash of soy sauce 1 teaspoon dried basil 1 teaspoon oregano ½ teaspoon dried garlic

Take a little zest of a washed lemon and stir it into a tub of Greek yoghurt, together with the juice of a lemon and as much lemon curd as desired for your flavour, I use about half a jar, the better the quality of lemon curd, the tastier the result.

Decorate with some more lemon zest.

Those without a dry mouth may like it served with a shortbread finger!

Cook the onion, mushrooms and pepper in olive oil until soft.

Add the herbs and cook for a further minute.

Add the tomatoes, fish sauce and soy sauce then return to the heat.

Microwave the salmon for three minutes with a dab of butter and some lemon juice.

Fold the salmon and seafood into the pan and simmer for two minutes.

Serve with rice or ribbon pasta.

We are proud to be associated with the following charities, amongst many others:

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Chief Executive Elizabeth Bevins Founder Anne Mawdsley MBE President Professor Dame Carol Black DBE Vice President Professor Chris Denton Trustees Barry Hicks Joanna Kaddish Professor Jeremy Pearson Professor David Scott

Patrons Sharron Davies MBE Roger Jefcoate CBE DL Nick Ross David Wilkie MBE Medical Advisors Dr. M Anderson Professor J Belch Sister S Brown Professor C Denton Professor A L Herrick Dr. C Lovell Dr. R Macdonald Professor P Maddison Professor R Moots Professor A Silman Professor D Veale

Head Office 112 Crewe Road, Alsager, Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk Shop: www.rsa-shop.co.uk Charity Reg No. 326306 VAT Reg No. 159099076

Executive Directors of RSA Trading Co Ltd Geoff Baggott Terry Warrener

We would appreciate your feedback on Hot News. What did and didn’t you enjoy in this issue?

What would you like to see more of and less of? Please let us know at Head Office by phoning 01270 872 776 or emailing info@raynauds.org.uk. Thank you.

Disclaimer The Raynaud’s & Scleroderma Association (RSA) does not endorse or recommend anything (including any products or services) which may be featured, used or referred to in this newsletter. Use of any such products or services or participation in any clinical trials or events are entirely at your own risk. Any views, opinions or statements expressed in this newsletter do not necessarily represent those of the RSA and they cannot be used for advertising purposes. Any information is provided is simply for the convenience of readers and the RSA will not be responsible for the content or availability of these products or services. Advertisements for products or services are not endorsed by the RSA and persons diagnosed with Raynaud’s or scleroderma, or suspecting these illnesses, should always consult with their own doctor to ensure proper evaluation and treatment.

Copyright This newsletter is the copyright of the Raynaud’s & Scleroderma Association (RSA). All rights are reserved. No part of this publication may be reproduced or transmitted in any ways or by any means, electronic or photocopying without prior permission of the copyright holder.

PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION

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